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Saturday, March 12, 2011

A Little Help Here?

There have been times when I have been so stressed out over some aspect of autism that I wanted to scream at Danny and possibly spank him. I know that this doesn't help in any way, but I don't think I would be human if I never lost my temper with my kids. Now, before you call DCFS on me, my kids are not in danger. I don't believe in spanking and have only done so a handful of times. Still, dealing with Danny's autism and SPD is incredibly stressful and it's difficult to keep from losing it sometimes.

As I have pondered the question of what special needs families need, I have come to several conclusions, the most important one being that there is just not enough support out there for families with autism, at least in most communities. I know in some cities and regions there are clinics and therapists and so many great programs, like summer camp and drama groups, but I think that is the exception rather than the rule.

Whole regions of the world suffer from dearth of help, and one of those regions happens to be the one in which I live. We have virtually no autism services here in this area, and definitely nothing in our city. The autism program for our state is located over 30 miles away, despite the fact that there are many, many kids with autism in my very city.

I am in the middle of arranging with them to come to our city to start a social skills group here, so that we don't have to drive so far every week, but it's a challenge. The director informed me that if we want a group here, I need to find a place to meet and enough families to make it worth their while to come to us. I understand that they are busy and overworked, but so are parents of kids with autism. In an ideal world, these state-funded agencies would be all over the place and would have the money and manpower to do all the legwork themselves.

Because the thing is, families with kids with autism need support. A lot of support. We need social skills groups, therapy and fun activities for our kids. We parents need opportunities to socialize and vent with other parents, because so often we feel completely isolated, and we rarely feel understood. We need more education about autism and therapy and intervention. And we need a break. More often than not, though, most parents have no leftover energy to devote to arranging support groups or negotiating with a state program to get services closer.

Interestingly, all of the activities we have here in our town (that I know about, anyway) were started by moms of kids with autism. We have a very casual, unofficial support group which meets at a cafe to laugh and commiserate. Any other groups we have here, like a monthly potluck group and a play group we had in the summer were also started by parents of kids with autism. I know of many online groups--all started by parents, too.

I am so grateful to these moms, but the thing is, most parents are already typically so overwhelmed, it's almost inconceivable that it would be up to us to find our own support sources.

Thankfully, there are so many moms and dads of special needs kids who have the determination, strength, and motivation to reach out and start these types of groups. Unfortunately, there is still just not enough support, and there are parents out there who are so overwhelmed, depressed or panicked that the last thing they could handle is organizing a support group or negotiating with some state agency or the school for more services.

I don't really have any answers. I know the government is totally financially strapped and can't be counted on to raise money for these types of organizations. Even though the number of families with autism and special needs is a huge portion of the population and it would be a wise investment to fund more support services, we cannot rely on the government to be there for us.

So, I guess that's why moms and dads like me and you need to continue to push for services and organize parental groups. And that's especially why we need to be supportive of each other and not get embroiled in judging or arguing about treatments. We need to be able to lean on each other, we need to feel less isolated and more understood.

This is why my new goal is to start reaching out more--online and in person--to parents who seem overwhelmed. And that's why I am going to make myself go to our support group more often and get to know the other moms in my area. Who knows? Maybe I'll actually help one of them feel a little less alone and overwhelmed.

I feel your pain. There are days when I know I could just shake my son. It's those same days that I spend a lot of extra time in my room to keep myself as calm as possible. This is not an easy road to travel but it goes so much easier with friends.

Patty, what an insightful post hitting to the core of the special needs family. Parents need help and support to do this very difficult and stressful job, and yet most of the time what we find is isolation and loneliness. Thank you for saying this so well and inspiring me to reach out just a bit more!

I've read your post several times and am struck by your kindness and willingness to help others. Most of the parents here don't meet as we're usually exhausted by the end of the day and I can't find anyone willing (or whom I trust) to watch my kiddo's.

I wish there were more out there like you and as other have stated, you've already made me feel less alone. And I thank you for that.

I second the idea that the parents in your town are lucky to have such an amazing support system! I think you are absolutely right that all parents need support, especially those of us with exceptionalities that can make life seem particularly overwhelming!

I moved a year ago from an area where I have lots of support and great parents to an area where everyone seems to keep very separate, and it is so much harder to get through even the little everyday stuff when you don't have a support system of some kind.

I think that blogging is a great way to reach out to each other though, and I know that reading blogs of other moms who are struggling with similar situations to mine (including yours!) makes me feel a lot better.